Cleft Lip/Cleft Palate thread

From:
JesiThomas

To: emberley

Posted: Nov-10 01:21 AM (202 of 213)

Hey there. Thanks for that website, I found it really a lot more helpful. I just got started with the whole facebook thing, so I'm still trying to figure out how to add my family. I'll get around to the mommie group eventually.

Kaylee had her second adjustment yesterday and she is not happy about it, at all. I can tell she is in a lot of discomfort, but thankfully she will never remember this part. I can't believe the difference that the NAM has made in her facial appearance already! We're excited about it so far. Unfortunately, though she does have some sensitivity to the tape, poor thing has some skin irritation on the cheek. I've had to buy and put socks on her hands to keep them away from her face because she wants to scratch the tape.

Overall though, we are very pleased with what it is doing for her. Anything to cut down on the number of surgeries she's got to go through, right? Anyway, just wanted to check in and say hello to you all. I've got to get some rest. Happy November all!

Hey there. Thanks for that website, I found it really a lot more helpful. I just got started with the whole facebook thing, so I'm still trying to figure out how to add my family. I'll get around to the mommie group eventually.

Kaylee had her second adjustment yesterday and she is not happy about it, at all. I can tell she is in a lot of discomfort, but thankfully she will never remember this part. I can't believe the difference that the NAM has made in her facial appearance already! We're excited about it so far. Unfortunately, though she does have some sensitivity to the tape, poor thing has some skin irritation on the cheek. I've had to buy and put socks on her hands to keep them away from her face because she wants to scratch the tape.

Overall though, we are very pleased with what it is doing for her. Anything to cut down on the number of surgeries she's got to go through, right? Anyway, just wanted to check in and say hello to you all. I've got to get some rest. Happy November all!

Man is least himself when he talks in his own person, give him a mask and he'll tell you the truth. ~Oscar Wilde

*~**JESS**~*

From:
JuneBaby14

To: emberley

Posted: Nov-13 01:20 AM (203 of 213)

just wondering if any of you know why your presious babys were born with this, did the doctors say ? were you on any medications that may have caused it ? is it herditary (sp)? just curious, I'm pregnant & was just wondering. thanks ! :)

just wondering if any of you know why your presious babys were born with this, did the doctors say ? were you on any medications that may have caused it ? is it herditary (sp)? just curious, I'm pregnant & was just wondering. thanks ! :)

Man is least himself when he talks in his own person, give him a mask and he'll tell you the truth. ~Oscar Wilde

*~**JESS**~*

From:
hopeforsibling

To: ALL

Posted: Nov-19 08:31 PM (205 of 213)

My daughter was born with a very severe cleft palate...lip was intact. I pumped for 9.5 months & all the got was breastmilk (no formula). But she was fed thru a haberman nipple.

Her ENT is one of the best! He goes overseas to correct clefts in underdeveloped areas. He had to wait to do her first surgery because of the width of the cleft until she was 13 months old. This was to repair her soft palate. Her second one came at 22 months old. Looks like she won't need anymore on her cleft!

Drs said she needed therapy to learn how to suck since her cleft didn't enable her to do it as a newborn... She just figured it out on her own! Her suck is a little weak, but getting better! She's now 30 months old & has speech therapy. Her cleft caused a hearing disability & she wears a Baha bone conduction hearing aid. We had no idea she had a cleft until the day she was born!

My daughter was born with a very severe cleft palate...lip was intact. I pumped for 9.5 months & all the got was breastmilk (no formula). But she was fed thru a haberman nipple.

Her ENT is one of the best! He goes overseas to correct clefts in underdeveloped areas. He had to wait to do her first surgery because of the width of the cleft until she was 13 months old. This was to repair her soft palate. Her second one came at 22 months old. Looks like she won't need anymore on her cleft!

Drs said she needed therapy to learn how to suck since her cleft didn't enable her to do it as a newborn... She just figured it out on her own! Her suck is a little weak, but getting better! She's now 30 months old & has speech therapy. Her cleft caused a hearing disability & she wears a Baha bone conduction hearing aid. We had no idea she had a cleft until the day she was born!

Hey there ladies. I was just popping in to say hello. I noticed it had been a while since anyone has really looked in here. I just wanted to bump this up just in case this thread was needed again.

So, it has been 11 weeks since Kaylee had her NAM fitted and put in. She had her nasal stent put in last week and hopefully we will schedule her for her first surgery on Tuesday! We are so excited. Her progress has been amazing. She was born with a unilateral cleft lip and palate that measured 12 mm wide. Now her cleft measures 1-2 mm and she is doing very well. Our pediatric dentist thinks it will be roughly another five weeks before she will have her first surgery where they will close her lip and insert her ear tubes.

Anyway, just wanted to give an update and say hello. Also, if anyone wants to read about Kaylee's progress you are more than welcome to visit her blog: HERE.

Have a good one ladies.

Hey there ladies. I was just popping in to say hello. I noticed it had been a while since anyone has really looked in here. I just wanted to bump this up just in case this thread was needed again.

So, it has been 11 weeks since Kaylee had her NAM fitted and put in. She had her nasal stent put in last week and hopefully we will schedule her for her first surgery on Tuesday! We are so excited. Her progress has been amazing. She was born with a unilateral cleft lip and palate that measured 12 mm wide. Now her cleft measures 1-2 mm and she is doing very well. Our pediatric dentist thinks it will be roughly another five weeks before she will have her first surgery where they will close her lip and insert her ear tubes.

Anyway, just wanted to give an update and say hello. Also, if anyone wants to read about Kaylee's progress you are more than welcome to visit her blog: HERE.

Man is least himself when he talks in his own person, give him a mask and he'll tell you the truth. ~Oscar Wilde

*~**JESS**~*

From:
AlanaErin

To: JesiThomas

Posted: Feb-19 11:11 AM (207 of 213)

Hey everyone.. I haven't checked back in a long time so I thought I would pop in. Addy had her surgery on her 6 month birthday to fix her lip. That was May 25, 2010. It was a very rough day to say the least. ( I don't remember if I updated you all about her surgery) She is still doing awesome, no tubes were ever needed for her ears. The plastic surgeon we talked to at the last cleft clinic in Dec said her notch in her gums is closing in as she grows, it looks like and by the time her adult teeth arrive she might not even need surgery because it might close by itself! I'm so happy for her!How is everyone else doing? I seen a couple of you are expecting again, Congrats! I understand your fears about the next baby having a cleft. Please let us know if you find out anything at your ultrasounds!-Alana

Hey everyone.. I haven't checked back in a long time so I thought I would pop in. Addy had her surgery on her 6 month birthday to fix her lip. That was May 25, 2010. It was a very rough day to say the least. ( I don't remember if I updated you all about her surgery) She is still doing awesome, no tubes were ever needed for her ears. The plastic surgeon we talked to at the last cleft clinic in Dec said her notch in her gums is closing in as she grows, it looks like and by the time her adult teeth arrive she might not even need surgery because it might close by itself! I'm so happy for her!How is everyone else doing? I seen a couple of you are expecting again, Congrats! I understand your fears about the next baby having a cleft. Please let us know if you find out anything at your ultrasounds!-Alana

We're done with surgeries for a while. There is a small hole left in the top of his palette that will have to close on its own so that his gums will be aligned. In a couple years, we'll probably start with oral surgey. Now, we're just sitting and watching as it heals.

We're done with surgeries for a while. There is a small hole left in the top of his palette that will have to close on its own so that his gums will be aligned. In a couple years, we'll probably start with oral surgey. Now, we're just sitting and watching as it heals.

Hey there ladies. I just thought I would pop in to say hello. I haven't been on in a while, I've found a more active cleft lip and palate group on BabyCenter. But I thought I might pop in to say hello, and let you all know that Kaylee is going in for her lip repair on Tuesday, she will be one week shy of her 6 month birthday!

I am getting nervous because I have never known anyone go through surgery before, much less my own child, so I am really nervous. Would anyone be able to tell me how their little ones reacted to the anesthesia. I asked the doctor if he could tell me what to expect, but he didn't really give me any real info, so I thought I might ask you ladies.

Thanks in advance, and I hope you are all doing well.

Hey there ladies. I just thought I would pop in to say hello. I haven't been on in a while, I've found a more active cleft lip and palate group on BabyCenter. But I thought I might pop in to say hello, and let you all know that Kaylee is going in for her lip repair on Tuesday, she will be one week shy of her 6 month birthday!

I am getting nervous because I have never known anyone go through surgery before, much less my own child, so I am really nervous. Would anyone be able to tell me how their little ones reacted to the anesthesia. I asked the doctor if he could tell me what to expect, but he didn't really give me any real info, so I thought I might ask you ladies.

Man is least himself when he talks in his own person, give him a mask and he'll tell you the truth. ~Oscar Wilde

*~**JESS**~*

From:
lhotard79

To: JesiThomas

Posted: Mar-14 02:30 PM (210 of 213)

My son did really well and he was about 10 months old at the time. The worst part was having to get all the paperwork sent to the judge for consent and back on time(he was in foster care at the time, so the judge had to sign all the consents). His biological mom was also there with me unsupervised most of the time, so that was a bit stressful. He came out looking great and actually, I was relieved when they wheeled him back to the OR because it was so stressful getting everything set up for the surgery(so glad he's adopted and legally mine now).

I didn't like the way he was breathing when he came out of surgery,but I think it was just me being paranoid. He sounded better after a couple hours though. He hardly cried at all, but I later came to learn he has an extremely high pain tolerance. That with his severe delays where he has no sense of danger is quite scary.

Good luck. Let us know how it goes.

My son did really well and he was about 10 months old at the time. The worst part was having to get all the paperwork sent to the judge for consent and back on time(he was in foster care at the time, so the judge had to sign all the consents). His biological mom was also there with me unsupervised most of the time, so that was a bit stressful. He came out looking great and actually, I was relieved when they wheeled him back to the OR because it was so stressful getting everything set up for the surgery(so glad he's adopted and legally mine now).

I didn't like the way he was breathing when he came out of surgery,but I think it was just me being paranoid. He sounded better after a couple hours though. He hardly cried at all, but I later came to learn he has an extremely high pain tolerance. That with his severe delays where he has no sense of danger is quite scary.

Hey everyone! Looks like our thread is almost dead :(Updates! updates! What about the ladies that were expecting another baby, hows the new little one doing?I am expecting my 2nd! Due on Aug 24 - if your on my fb no fb posts pretty please, we are not viral yet lolI asked my Dr. about being able to see if this little one will have a cleft on my 20 week u/s and he said that she/he will probably still be to small and I wont be able to know anything until the 36 week u/s but I just told my sis the other day, what will be will be, a cleft lip/palate is formed during the 6th week and if she/he has one it's already there.Whats been happening with you guys?!?!-Alana

Hey everyone! Looks like our thread is almost dead :(Updates! updates! What about the ladies that were expecting another baby, hows the new little one doing?I am expecting my 2nd! Due on Aug 24 - if your on my fb no fb posts pretty please, we are not viral yet lolI asked my Dr. about being able to see if this little one will have a cleft on my 20 week u/s and he said that she/he will probably still be to small and I wont be able to know anything until the 36 week u/s but I just told my sis the other day, what will be will be, a cleft lip/palate is formed during the 6th week and if she/he has one it's already there.Whats been happening with you guys?!?!-Alana

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